Keeping Track of My Father's Exit. By Alan G. Ampolsk

The Story So Far

I'm a writer, photographer, consultant. Age 51. My father was a reporter and editor. Then he became something other than that. He died February 8, 2010 at 87. He was widowed in 2003. His decline started a little earlier. His sister died of Alzheimer's.

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Things Go South

So... when I left off the story, the situation was this...

It was the middle of 2002. Over the previous year, there'd been a couple of major family upheavals. But they were pretty firmly rooted in a long history of conflicts, and though my father's reactions had been extreme, I couldn't say that they were abnormal, given all the circumstances.

He was, on the other hand, having trouble with names. That was a new and persistent enough problem that by mid-year, I was talking to my mother about it and beginning to have anxiety dreams about it as well.

That's where we were when my mother's breast cancer broke loose.

Now, even at this late remove, the story of my mother's final cancer rounds is difficult to deal with. In fact, my reluctance to come to grips with it probably accounts - more than I'd like to admit - for the long silence on this blog. But since it's part of the story of his Alzheimer's, I need to come to grips with it.

There's this caveat, however. This blog is about his Alzheimer's, not her cancer, so I'm not going to go into too much detail about her story except to the extent it has a bearing on his.

A few general observations, though...

She was first diagnosed in 1982, just a couple of weeks after I graduated from college.

She lived with cancer for 20 years and just over seven months. That was quite a stretch. Her cancer was the slowest-moving thing in creation until, suddenly, at the end, it wasn't.

Her living with cancer meant that she was able to participate in some wonderful family events, like my wedding. She was also able to participate in some ugly ones, like the massive fight over my brain-damaged, post-suicidal cousin. And she played her part in creating some hellacious misunderstandings. All of which suggests that, yes, as the "Stand Up to Cancer" people would have it, living with cancer is a rich, full experience. It does not, however, suggest - as they do - that life is a wonderful warm process of affirmation. It is, but it's also an appalling clumsy blood-feud, and an arena for confusion and hurt, and everything in between. In other words, life isn't some consumerist self-help fantasy about feeling good about yourself. Life is just life.

When she was diagnosed, I realized that things were going to be difficult. What I didn't realize was that the next 28 years of my life were going to be caught up with family illnesses. I didn't fully realize this 'til after the fact. Your life often has nothing to do with what you think your life is about. This is usually not at all clear except in retrospect. For the longest time I thought my life was about having a career and advancing through a series of achievements and becoming progressively more secure. I was wrong.

My father was my mother's caregiver all the way through her illness. At first that wasn't a full-time job. He continued to write and work as an editor for as long as that gig lasted. He also took over for her in real estate sales. When I went to college, she'd gotten a license and gone to work for a small brokerage that handled small, mostly eccentric Manhattan co-op apartments. She was able to return to that in between treatments and during good stretches. But he got his own license and tried to pick up the slack. He liked it. The apartments were unusual and difficult to sell (I remember one on West 38th Street where the building had a 200-year lien on the title), and the people were interesting (there was the investment banker who owned that West 38th Street apartment who had a stress-related drug problem - one day when he was showing it, he found her unexpectely, asleep in the bed. He threw a comforter over her and went on with the showing. The prospects never noticed). The work captured what he'd like best about being a newspaper reporter, which was talking to people and getting them to open up. He said it was like reporting without having to write the story, which he didn't enjoy nearly as much.

But in addition to all that, there was the caregiving - running her back and forth to her medical appointments, interpreting for the doctors, helping her through her year of chemo, getting her through another surgery when she had her recurrence in '91, in general trying to keep her morale up. He once said to me - this was well into what should have been his retirement - that he'd never worked harder in his career than he was doing running her medical care. It became a full-time job over the years. By the late 1990's, he wasn't doing anything else.

Then there was the finances. The two surgeries and the chemo were covered, first by private insurance, later by Medicare. But most of the time, she was treated with hormone therapies - Megace for the longest time, then other agents when that became less effective. All of them were prescription drugs taken at home, not administered in a doctor's office. At the time there was no such thing as Medicare Part D, and no one that I'm aware of had private prescription drug coverage. The cost was hellacious. So on a limited income (the magazine business was on its last legs, the real estate business was a hit or miss - mostly miss- affair), he tried to juggle the decent-but-not-huge nest egg he'd inherited from his mother and make sure it was generating enough money to cover her meds and keep food on the table. Mostly it worked, and thanks to some skillful management on the part of the broker, the principal grew just a little faster than the dividend and interest income and the rest of the growth component flowed out to the pharmaceutical industry. But it was a close thing. Sharp market downturns, like the ones in '87 and '98 and 2000-2001 and others created by our titans of finance, were truly scary.

My mother, who had, among many other qualities, an angry sense of entitlement (actually, it was more a sense of justice - she wanted to live well in compensation for past slights) never fully got the economic reality of the situation, and spent a certain amount of time being furious with my father because he kept turning her down for European vacations and other things she wanted to do. This was intermittent, though. They did manage to get to Martha's Vineyard after the season a couple of years running, and there was a place they found in Spring Lake, NJ that they liked. But the tension was always in the background.

My father decided to do without many things he might have liked - or I think he decided that. It was hard to tell because over the years he developed a monastic quality so fully that it was hard to tell what part of it was compensation for his circumstances, and what was just him. Either he learned to adjust to a simple life or he was naturally suited for it. It was difficult to say.

One of the things he did without - as I've mentioned in the past - was long-term care insurance. Given the time period - 1980's and 1990's - I'm not sure how widespread long-term care insurance was. I don't recall any conversations about it. So I don't want to overstate the case that this was an either-or - a Hobson's choice, or Sophie's, or some sort of choice like that. But the fact remains that if he thought about long-term care insurance, he wouldn't have been able to act on it because he wouldn't have been able to afford it. For one reason or the other - either it didn't exist or the cash wasn't there - it wasn't an option. Years later, when I was setting fire to the same cash reserve to pay for his care, I found myself wondering why someone as cautious and prudent as he was hadn't bothered to cover this one critical eventuality. The answer is that he couldn't have done it even if he'd tried. I sometimes talk about this with right-leaning friends who are convinced that life is a drama of individual achievement, and that those who fail are somehow being justly punished by The Market for their lack of foresight or initiative or what have you. The answer, for me at least, is more complicated. A broken healthcare finance system is a broken healthcare finance system, you can easily find yourself without any viable options, and as they said in the Second World War, you never see the one that gets you. He prepared for everything but the circumstances he actually found himself in. Preparing for those circumstances wasn't an option.

Why do I go on at such length about the circumstances of her cancer? Because, in a nutshell, this is the atmosphere - this is the context - in which my father's Alzheimer's developed. Now, I'm not suggesting that there's a simple one-to-one relationship between the stress he was under and the degeneration of his brain. As I've described, his Alzheimer's has a likely genetic component that encompasses his sister and his mother and maybe many others besides. But the stress couldn't have helped. Imagine that your cognition is being challenged, your thought processes are getting troublesome in dozens of small ways that are barely evident, that underneath all this, the disease mechanism is in full swing - and at the same time, every day, your brain is being subjected to a huge bath of stress-related neurochemistry and your bloodstream is full of cortisol and who knows what else. Your system is marginal to begin with. Can any of this be good? I can't speak as a medical professional but I doubt it, somehow.

All through the course of her illness, my mother had little outbreaks - there'd be unrelated skin cancers and such - and other health problems, like the heart disease and diabetes she developed as a result of Megace-related weight gain (steroid treatments may also have played a part). And then there'd be aggressive moves by the primary cancer. Dr. R - he was her oncologist long before he became our family physician - would change drugs and hold the line 'til something else happened. It was a constant game of whack-a-mole.

In early 2001 she had a more tenacious outbreak that required a round of radiation treatment. By midyear it seemed to have succeeded. In the late spring of 2002 the same thing happened, and the radition worked for a while. In October things seemed normal, and she and my father were starting to do holiday shopping. In mid-November the pain returned.

Comments

Its nice to see you writing again. I never commented before but followed your journey here as a lurker. My mom passed in Sept. 2010 from AD. Her journey was very different than your father's, but also has many threads of similiarity in the progression of their mental decline. Now, to my utter surprise,I am facing the AD caregiver path again wiht my dad who was always been so mentally sharp. Just when I thought there my might be a period of respite in my life, it all came tumbling down again...I am sure you felt somewhat the same after your mother's passing. Your experiences with your dad and now your view of these experiences in retrospect is very engaging and expressed quite eloquently. I too have cared in one way or another for my parents with their varying health problems for some 25 years. I am not sure I can endure much longer, but its good to know someone else has been on a similar path. Keep writing.